Hello and Welcome to this Blog about how José and I are learning to conquer Tetraplegia (paralysis of all four limbs). Following José'...

Friday, 29 April 2016

23rd April 2016 - A Perfect Day

Saturday 23rd April 2016.

José and I were both acutely aware that although not the anniversary of his accident (25th April) today was the same Saturday a year on, it was the weekend we didn't get in 2015. I cooked ribs on Friday night because José said he missed 'active' eating - we made a mess but he enjoyed ripping the meat off the bone with his teeth.

Saturday morning I popped in for a quick cuddle and a good morning kiss before sorting out Bradley. We had a quick chat about marathon plans, last year we were supposed to cheer on the starters, grab a bacon sarnie, then José would go to meet running club friends further along the route. We decided to do the same this year - but watching at home on TV instead of at Charlton Park; I bought in some bacon.

Following his morning personal care routine José asked for a shave from Zofia, the carer trusted with the task, and to dress in his smart jeans and the woolly jumper he considered smart (and I thought resembled a fisherman's favorite).

When Bradley and I got back from our walk I sat upstairs making José's suggested blog amends, listening to the exuberant squeals from downstairs. The double-up carer for the day hadn't been for a while and was amazed by the progress José was making with his exercises. A credit to the attention from carers and the expertise of the physios, in the three months since discharge José had progressed from no movement to working on what we called the 'royal wave' with his left arm and we were beginning to see an awakening in the right bicep too.

Our plan for the day was to head out after lunch to meet a good friend in Chelsea where we'd watch a film (Jane Got A Gun) and then to meet up with family to watch a concert at the Cadogen Hall in honour of the Queen's 90th. We celebrated her actual birthday two days before by attending a beacon lighting at Oxleas Café - any excuse for a portion of chips and a glass of wine. An awkward moment when the pearly king tried to shake José's hand for good luck; we managed it third party.

Unfortunately on Friday night we realised Chelsea cinema isn't wheelchair accessible. So once up and about José jumped straight on the computer (controlled by his eyes) to look at films at Fulham Road cinema, their accessibility wasn't clear so we called and found out they have limited wheelchair access and the only film available to José was The Jungle Book. We declined.

Deciding there surely must be something wheelchair accessible around Sloane Square we decided to meet up any way.  We ate the delicious stew his mum had left us with some lime rice and green beans, then Zofia gave us a lift to Eltham station.

We knew we would be late home so for the first time we had pre-booked our return journey.  We would get to Victoria at 22:09, be put on the 22:39 to Lewisham where we would have to get off to be put in a taxi to Eltham station where we would meet Zofia and the car.  We confirmed these details with our favorite Customer Services Assistant at Eltham - no sarcasm Gemma has been really lovely.

On our journey to Victoria we chatted about a report José had just received. During his last hospital admission José had suffered a pro-longed respiratory arrest.  His lungs had blocked with an infection and his heart had stopped for the fifth time as a result.  He was in intensive care so emergency care was quickly administered but due to the fixings in his neck it was difficult for them to get the ventilator tube in place. We knew that there was a risk of brain damage as his brain had been starved of oxygen for the duration.  We were grateful that the damage seemed minimal but the report we had just received told us exactly what the problems were.
José was focused on the negative elements "reduced initiation and a degree of difficulty in mental flexibility and response inhibition" - he hadn't remembered exactly what the points were but didn't like being below average. Whilst I was pleased with the good things "Verbal based intellectual skills were intact with no deterioration...word retrieval skills were very good...memory was satisfactory...nonverbal abstract reasoning and problem solving were satisfactory." What I hadn't liked was José being described as a "casually-dressed gentleman". The pre-accident José would never have gone to Harley Street casually dressed, now he didn't have a choice.

We arrived at Victoria and made use of the Radar key for the first time. Jumping the queue to the toilets and avoiding the 'pay-to-pee' charge.  We enjoy these little perks, the day before we had queue jumped almost 70 places waiting to have a blood test at the local hospital just by having pressure relief.

Having met our friend José suggested the pub opposite called the Dickens or Wordsworth or something.  It is the Shakespeare - and it was the 400th anniversary of Shakespeare's death, even if it had been accessible there wasn't room for us.

Instead we walked down to Sloane square in the sun, we went in to the first place but it was quite busy and actually we thought it would be nice to sit in the sun.  A barman gave us directions to a pub with a beer garden but when we left we found the place next door had a free table on the front, so we settled down to sit in the sun, watch the people and to admire the expensive cars passing.

We ordered a good bottle of wine and set about putting the world to rights. Time flew and we had a much better catch-up than we would have done if we'd gone to the cinema. We chatted about a mutual friend's band and promised to get to see them as soon as they were playing in an accessible venue at an accessible time.  Time was marching forward so we opted for the pre-theatre two course menu with a second bottle of wine.  José had the charcuterie board and we all had the steak and frites.

Finishing our meal we had to escape the attentions of a drunk and his dog - he had a disabled sister so his stinky dog would be OK with José, uh great? - and an old lady who was also three sheets to the wind.  We got away and said our goodbyes having had a really lovely relaxed afternoon.

The Cadogen Hall was just on the next road but to get there we had to take a circuitous route to find dropped kerbs that weren't blocked by parked cars.  We arrived in time, met José's cousin and went in with assistance from the front of house staff.  We had to go down one lift, through the reception area (where a man stepped backwards out of our way, landed on a pull-up banner, lost his balance and ended up sitting in a pot plant), up another lift and then in to the stalls.

José and I stopped at the toilet where we had a little giggle at possibly being the fittest group in attendance as everyone else seemed to be very retired veterans. We found our seats near the door, said proper hellos to sister, brother-in-law and two cousins. José put in an order for another glass of wine and we took off his coat ready to settle down to watch the show.

And that's where our perfect day ends.

If you want to stop reading now then please do, but I know other people want to understand what happened. If that's you then it's OK to read on.

To understand what happened you need to understand three things.

First, anyone sitting in a wheelchair is advised to relieve the pressure off their sitting bones for two minutes every hour. This helps to reduce the chances of developing a pressure sore. José achieves this by being pulled forward so he's touching his ankles.

Secondly, following his accident José's diaphragm was weak and his intercostal muscles paralysed.  It took considerable effort for him to learn to breathe again and it was still impossible for him to cough, sneeze or laugh.  The risk of his lungs getting blocked was very real.  He could have kept a tracheotomy in place but he didn't want this, despite knowing that with the metal work in his neck it was hard to get him ventilated.

Thirdly, José's level of injury meant that his swallow was weak.  He had difficulty clearing his esophagus and food and liquid could easily access his lungs. The only way to clear an obstruction was by us manually helping him to cough with abdominal thrusts.  José was given the choice to stay on a PEG feed where liquid nutrition would be pumped directly in to his stomach every night, but despite the risks of choking he wanted to eat and drink and to enjoy these things in life.

So now you understand the risks you can understand what happened next.

I positioned José forward to take off his coat and to give him some pressure relief before the show started.  The pressure on his stomach whilst he was bent forward caused some of the recently eaten meal to travel from the stomach up in to his mouth.  When I helped him back up the partially digested food reversed it's journey but went down the open airway.
I rushed José out of the room and tried to clear his airway but the quantity was too great.  José lost consciousness quickly, and I know from the previous episodes that he wouldn't remember the incident. We called an ambulance and got José back to street level where we performed CPR and continued to try to clear his airway.

The paramedics took over the CPR and used suction to clear a lot of food from José's lungs.  They tried everything in their power including adrenaline and a CPR machine but had to take the decision to call it a day.  It was at this point that they felt a pulse, the lead paramedic had never experienced this before.  It was all hands on deck to get José, and his incredible fighting spirit, manually ventilated ("bagged") and in to the back of the ambulance.  He was rushed to St Thomas' A&E but his heart stopped again. He was briefly responding to adrenaline shots but in the end we had to take the decision to stop, his brain had been without oxygen for too long.

And that's where our not-quite-perfect day ends.  Sitting in A&E on a Saturday night surronded by drunk and abusive Pearly Kings of London boroughs.

For José this was the end of an almighty struggle.  A year in which he proved that disability doesn't have to stop you living life.  A year in which he inspired so many people.  A year none of us want to repeat.  When those first paramedics, who responded to a 999 call to help save a cyclist, named him Zulu they couldn't have chosen a better name.  He was a warrior to the end and now he's free to run, cycle and climb in our hearts.

1 comment:

  1. Katie, the normal year you were able to give Jose with all the challenges thrown at you both enabled Jose to enjoy life. This was down to your dedication and love for him and his amazing fighting spirit x